6 weeks post-op!

the 6 week mark is kind of a big milestone for SDR patients. it's basically when we can officially get back to "normal" as far as every day operations go. prior to this point we werent supposed to be lifting him under the arms, no using an e-stim unit, no hippotherapy...basically still handling him with kid gloves. but now that 6 weeks have passed we can officially say that dom has healed from his surgery. so here are a few quick updates:

taking good steps!

we're making really good progress. therapy nowadays consists of about half an hour of work getting from his knees to a standing position, or maybe stretching or sitting...and a half an hour of walking down the hallways at st. joe's. he's taking some really really pretty steps--things that he wasnt doing prior to the surgery. now that the spasticity is almost completely gone we're realizing a couple of things 1) his right leg is a more affected than his left (which is weird because his left arm is more affected than his right) and 2) his quads are still trying to get strong enough to walk consistently. our PT said the other day that she could feel his muscles trying to get moving and trying to figure out how to fire to make the leg move--it's a somewhat new sensation for him. lefty is doing really well...with almost flawless heel toe steps. righty lags a little bit, but we're slowly but surely getting there. 

sleeping!

oddly enough the surgery has resulted in him sleeping a little better. prior to SDR we maybe got 1 full night of sleep a week. normally he'd wake up 1-2 times a night. but lately we're getting at least 2-3 nights where he sleeps fully through which is great for us. we're realizing that his spasticity might have come with some pain...i mean his muscles/hamstrings everything were so tight...it had to be uncomfortable. seems like getting rid of that has put him in a more comfortable space. 

funny story: so last week was a particularly bad week sleeping wise. no idea why...we were just up at 12:15 every night for about an hour and a half. d and i were zombies by the end of the week. finally on thursday he actually slept through.....................which would have been great except the older one woke up at like 1 and asked if he could climb into bed, and then at 3 the youngest (who sleeps like a damn champ) decided that she was feeling snacky and wanted a bottle. so yeah. dommy slept well but the other two raised his flag in his absence to make sure that mom and dad got no sleep. starting to think it's a criminal conspiracy. 

what's next!

well now that we've conquered SDR D and i have made another realization. speech has been really frustrating for us...dommy had words at 18 months and then just lost them. speech therapy is really frustrating for everyone. we made great gains doing feeding therapy but we feel like we're not getting anywhere with speech right now. 

so we decided to do some digging and we feel pretty confident that dom has apraxia of speech. my understanding of that is that he's smart enough to know the value of words and what words are, but just cant quite figure out how to make his mouth make the words. like we just cant quite get the muscle movement down.

all of this was a total lightbulb aha moment for us...i mean we had to teach him how to eat solids from the ground up...tongue movement, chewing, etc. we had to teach him how to move his mouth. makes sense that we'd have to do the same for speech. 

so on one hand it's a bit overwhelming to have another diagnosis on our hands, on the other we FINALLY have a name for what's been frustrating us. apraxia comes with its own set of therapy techniques and things to try...which is really really good news. we're ready to attack this one to get it figured out. 

feelings! 

there's a weird dichotomy for us...the more dom does the more impatient we get for him to do more. if for some reason we knew he wouldnt or couldnt walk, then we would be perfectly content...but now that he's walking well in his gait trainer and showing that he has much less spasticity in his lower extremeties...we just kind of want him to be doing more. we're so ready for him to walk because we know he's capable of it. we've got one more procedure in st. louis coming up in july to lengthen his heel cord and his hamstrings...and we're ready for that to happen ASAP. hard to be patient when you know exactly what you want. maybe that's a good thing. maybe being too patient would result in complacency. either way it's something that we kind of struggle with....knowing that we're making good progress, seeing that we have a decent ways to go, and just wanting to work as hard as we can to get there. 

we've settled in pretty well to the 5 therapies a week schedule...and i think Dom has found his groove too in what to expect as far as his daily routine goes. 

so far so good friends. we're trending in the right direction. 

SDR Day

it's 9 oclock and i've been up since 3 am, so you'll have to excuse me if this gets rambly and overly emotional.

a two year long dream was actualized today. the first time we heard about SDR was when dommy was about a year old knowing that we couldnt apply until he was 2. at 2 we got turned down and told to reapply when he was 3. at 3 we reapplied and got accepted...and here we are at 3.5 years old.

not to mention the anticipation of getting here for the past two months. everyday has felt like two days...one day full of the normal routine, but also filled with 24 hours of fretting about logistics, leaving our eldest with his grandparents for two weeks....not to mention our sweet gommy having his vertebrae cracked open, spinal nerves untangled and then cut. it's been draining.

but here we are.

about a week and a half ago we were at home and gommy bunny hopped (as he's known to do) over to our staircase and tried to get up the first step. he knows the motions well...lift one leg up, push with the other all with your hands on the second step, but his tightness wouldnt let him get up that first step. he wanted it so damn bad. he tried and and tried and after a while started crying out of frustration.

i picked him up and told him that as God was my witness, i was going to get him up those steps. we were going to get to the top of our staircase.

coincidentally enough yesterday at our pre-op PT evaluation he saw a set of stairs and managed to get up the first step by himself. i feel like that was his way of saying "you do your part dad, God will do his part, and I'm damn sure going to do my part"

so now one big step is done. it's time for recovery. the it's time to do 5 PT sessions a week for the next 6 months.

none of this has been easy. it wont be easy moving forward.

but it's so worth it. so very worth it.

today was a good day. today was the first day of what's going to be a series of good days.

an update on SDR--st. louis here we come

a little over a year ago we applied for gommy to be a candidate for selective dorsal rhizotomy surgery in st. louis. we were pretty devastated when we were rejected. at the time we had put a ton of hope into the possibilities that that surgery could provide--a life with lessened spasticity and increased mobility...and to get turned down was as if someone was saying that we werent allowed to ever have those things.

well a year later we put together a new application...complete with new videos and paperwork...and lo and behold we were accepted. not only were we accepted but the doctor told us how pleased he was with dominic's progress and indicated that he could see no reason at all that dominic wouldnt walk independently at some point.

read that again. the doctor thinks dominic will walk independently. HE THINKS DOMINIC WILL WALK INDEPENDENTLY AS A RESULT OF THIS SURGERY. i want to cry just thinking about it.

D and i are yin and yang. what she stresses out about i'm typically perfectly ok with and whatever i stress out she's perfectly ok with. D has no fear as it relates to this surgery...and me...well i'm not quite there. we know that this is what needs to happen and a few hours of surgery combined with a few months of intense physical therapy is a small price to pay for a lifetime of freedom.

however i'm trying to channel my inner kevin mccalister by saying "this is it...dont get scared now". i am terrified  to send my sweet gommy going into a spinal surgery. he's been sedated before....but it's that lack of control that lack of ability to be with him every step of the way. it's so cliche to say but i wish they would just say "hey we can do the surgery on you and he'll reap the benefits". man i'd sign up for that 10 times over. or perhaps if they said "well research shows us that if we cut off the dad's right hand it's basically the same as SDR" i'd respond with "great, at least now i'll spend less time on twitter"

but alas none of that is the way that things work. so right now i'm drawing from the strength of d and gommy. they are way stronger and way tougher than i am. i'll get there. but i might just have to fake it for a while.

the journey starts on March 11th with a drive to St. Louis and the surgery itself is scheduled for march 15. a day where d and i are able to put wheels into motion to hopefully give gommy a bit more freedom and maybe few more possibilities than he would have had otherwise.

time to get my mind right. we'll be ready.

little baby girl

so apparently a random day last week was national daughter's day. i kind of feel like a jerk because i'm pretty sure we missed national sons day. but then again our boys are pretty darn spoiled so every day is really national sons day.

d is 36 weeks pregnant. a little baby girl is about to enter our lives and throw everything gloriously up in the air. cant really put into words how excited i am. i think part of it stems from the fact that i know this is the last one...that makes me want to enjoy every single second of it. i think the second thing that makes me excited is the fact that d and i are blessed that we get to have three completely different and unique parenting experience. vincent was our first, which was crazy in and of itself. dommy reshifted every single paradigm we had about parenting and made us better stronger and more loving people. and now a little girl? man. we are lucky lucky people.

baby 3 was close to not happening. with everything that's happened over the past few years d and i wondered whether we'd have the time and energy to have/raise another child. both of us really really wanted a third, but just didnt know if that would be a good idea. all of that flipped on a dime one day. we went to get a second opinion from a physiatrist in houston...and the guy basically told us that the pathway we were on was correct and that while surgery might be a good option down the road, right now it wasnt the right thing. that was hard to hear. it was like being rejected for the second time in a row.

we went to grab some lunch from smashburger (random that i remember that), and when i got back in the car d looked at me and said "i've made a decision"...i thought it was going to be something having to do with surgery/medication etc. but she looked at me and told me that she'd decided that we were going to have a third. she said that we thought we'd wait to make a decision on a third when life got a little easier...but the reality was that life wasnt going to get any easier--we just needed to get tougher. and if life wasnt going to get easier, why not throw a baby in the mix? why not give our two sons a little sibling? we've always made it a point to not let dommy's CP define who he is or who we are as a family. and with the decision to have a third we were committing to that point. and it was the absolute right thing for us and our boys.

flashforward 30 some odd weeks and here we are. hospital bag packed. crib all ready to go, and shelve in our room full of random baby stuff. completely impractical pink frilly outfits purchased. amazon prime subscribe and save updated to include newborn diapers.

mannnn i cant even tell you. my heart grows by a million sizes when i think of our daughter hanging out with her brothers. my heart grows when i think of my wife nursing a newborn. my heart grows when i think about dommy and vincent BOTH being big brothers.

giddy up. we've got a fun season coming up.

brothers

a good friend of mine turned me onto a quote..."worry is interest paid on a debt you dont owe" (or something close to that). i try to remind myself of that on a pretty regular basis.

but yet i worry. one of my worries is whether dom and vincent will have the kind of brotherly relationship i had imagined for them. being an only child myself, much of that envisioned relationship was based on television or seeing family friends...but i just worry about their relationship...fully recognizing that it will occur independent of anything that i do and that i have little control over it.

interest on a debt you dont owe.

so in the midst of that worry something like this happens. to set this scene up, the boys are sharing a lollipop here. i found out that little brothers can hold their own, regardless of impairment.

vincent doesnt want to share (naturally...i mean who would?) but gommy keeps coming after him. they bicker like little brothers do and should. and dom comes after his big brother like little brothers do and should.

its stuff like this that makes me realize how little control i have...and how wonderful that is. that my worries dont mean anything. that really what i do have are two beautiful children who love each other and whose relationship will grow and thrive in it's own unique beautiful way...and soon there will be three beautiful children whose will develop a unique relationship inclusive of individual abilities, inabilities, emotional quirks...the whole nine.

and while i'm here, i have to brag a bit on my eldest. you guys...he is such a great big brother. the other night he was hanging with my mom. dom was talking/laughing himself to sleep in the other room, and my mom asked vincent "do you wish gommy talked to you more"?

vincent answered in the way he always does. he said "gommy talks. he just talks in his own way. someday he'll be able to talk like me and i'll understand him better". and with that it was done. vincent had taught my mother that talking isnt necessarily the only form of communication between brothers.

vincent is the kind of child that starts singing softly to dom when dom starts crying. vincent is the type of child that immediately runs to tell me when dom is in any sort of trouble. vincent is the type of child that contantly asks D how his little sister is doing. vincent on numerous occasions has tried his darndest to take charge of a situation and show gommy just how to do things like play with legos or play games on his ipad.

so while i was over here worrying about their relationship...i should have been having some faith in the fact that vincent and dominic both are just good kids. good kids who love each other. and maybe their interactional style might not have been what i expected or dreamed of...but it's somehow surpassed all of that and both of them are going to be better for it.

worry is interest on a debt you dont owe. my kids continue to teach me that lesson.

life comes at you fast

well...our little story had another wrinkle thrown in. many of you know that dom's beloved caregiver found out she has an aggressive form of breast cancer back in january (happy to report that she is fighting like hell--and winning!), leading to us needing to find care for gommy.

the temporary solution was D's mom shouldering all of the burden and coming in to help us on a weekly basis for close to 5 months. words cant describe what she did and continues to do for us. she is our hero in all of this.

the longer term solution was to work with an au pair agency to find someone to come in and take care of the kids...so that's what we did. and it worked for a while.

but it stopped working. circumstances out of our control (and ones that are terribly frustrating to us) have led to us being without childcare again on a temporary basis (who knows what temporary means).

fortunately for us d and i are pretty resilient, and spent time this week working on steps 1A through 1E...until we realized that we should probably wait to see what happens with those before we move on to step 1F. we will get through this. we will survive this. i dont know if those two sentences are me reflecting on the situation or if they are a mini pep talk...maybe they're some combination of the two.

but we are back to square one. and it's frustrating and a bit disheartening to be here.

i told my mom about this yesterday and she said "well, just remember what you've been through. you've been through news about gommy and survived that. you'll survive this"...which at first took me a back, but later i realized is completely true. this aint sh*t. we'll get through this.

i dont know what the solution is going to be. not sure if we're going to go back to the au pair agency, or if we're going to look at  in town solutions (naturally we are looking at both right now). i also went to a daycare to drop a deposit for didi (daddy's nickname for his little girl), and while i was there i asked about whether they had ever had kids with disabilities in their facility. the person i talked to paused before giving me an answer....

pauses arent very encouraging.

and the answer was that they could work with us to figure it out. that they have had kids with down syndrome and autism, but no kids with mobility issues. so they'd have to start from scratch. the thing that scares me about that is that daycares are typically organized by ability--meaning once a kid starts walking they move out of one room. once they start doing other things they move into a different room.

dom has the intellectual needs of a 2.5 year old but he's stuck in the body of an 8 month old. that combo is not good for daycares who classify based mostly on physical ability. i'm sure the system works, but the system was designed for neurotypical kids and therefore we just dont fit into it.

but we'll figure that out too.

someday we'll be able to look back on this and shake our head with a smile and say "man, you remember that? remember how stressful that time was? remember how we talked about moving or quitting jobs? how silly was that?"

we'll get to that point someday. we're not there yet today, but we'll get there someday.

two years ago today

Two years ago everything changed.

I cant say that tuesday march 26 2013 started off like any other day...i mean afterall we were in austin waiting to get an MRI at the urging of our neurologist who wanted to figure out exactly why dom was so tight. but really while we were nervous, we were somewhat confident that everything would be relatively ok. 

The day started off on a vigilant but confident note. 

The day ended with a diagnosis that we didn't quite understand and a future that (at the time) seemed 100% uncertain. We didn't lose anything tangible that day--if anything we gained information on what made dom himself--but we lost the intangibles. we lost predictability. we lost the confidence in what we were doing as parents. Fundamentally we lost the assurance that everything would be "ok". 

But here we are two full years later and things are more than ok. In fact things are fantastic. Things are moving along at light speed. Dom is in about 8 hours of therapy a week and is on the verge of being mobile (either by walking or crawling). He's struggling with words...we had some and strangely lost them...but manages to communicate his needs in a way to make the folks who know him understand. But more than anything he's a lanky ball of energy and fun.  

I wish I could go back to that moment where D and I were sitting in our car after meeting with the neurologist. We were in the parking garage just sitting in silence because we didnt have the words to reassure ourselves that everything would be ok--much less reassure each other. I wish I could go back and tap on the window and just say "hey, you can do this. you have to do this. your son is awesome. now get busy on learning who you need to be as a parent. get to work.". but maybe that message wouldn't have been heeded at the time. 

maybe I need the perspective of two years having passed to be able to think that. 

I spent a lot of those first weeks post-diagnosis resenting Dom's diagnosis. I resented PMG. I resented cerebral palsy. I was there to fix it. I was there to figure this out. But slowly I realized that PMG and CP are what make Dom who he is--yet they are not the sole definitions of who he is. They're just designations of how his brain looks. And I love everything about this kid....his looks, his laugh, his tendency to pick on his brother, his inability to go straight to sleep instead staying up laughing for up to two hours, his brain deformities, his smile, his long eyelashes, his constant desire to do better and to be better and the levels to which i see him push himself in therapy. i love every single little bit of it with every fiber of my being and to the deepest core of who i am. 

so in hindsight its seems silly to think that at one point in time i was afraid of cerebral palsy, because that means i was afraid of who dommy is. 

but i don't want to forget those emotions. i don't want to forget how sad we were, and how much we subconsciously [unfairly] mourned for his future [that has yet to be written so doesn't matter] i don't want to lose that because those lows make me realize just how high we are right now and just how good life is. is it what we expected? absolutely not...but it's better. it's made me stronger. it's made me a better father and has added an infinite amount of clarity to who i am and who we are as a family. 

i wouldn't trade this life for anything. its utterly exhausting--don't get me wrong there--but i wouldn't trade it for any damn thing in this world. 

two years ago today D and I cried ourselves to sleep. 

tonight we'll lie in bed and watch netflix as we listen to dommy laugh himself to sleep.